UPDATE Oct 2, 2019: Mitchell Herndon passed away on October 2, 2019. He was was taken off life support according to his final wishes after doctors discovered the disease had infiltrated his brain. He was surrounded by his family, and left in peace according to his mother Michele Herndon.

Mitchell Herndon has a disease so rare that there is no name for it. As one of only two known patients in the world, he grapples with a reality that sees him as a case study for doctors who are only beginning to learn about his condition.
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This Young Man Is One Of Two People In The World Coping With A Rare, Nameless Disease | NBC News